Allocating a Future: Ethics and Organ Transplantation

by Heidi Williamsa paper prepared for "Ethics in the Health Care Professions,"
an undergraduate class in the Religious Studies Department of Santa Clara
University

In February 2003, 17-year-old Jesica Santillan received a heart-lung
transplant at Duke University Hospital that went badly awry because, by
mistake, doctors used donor organs from a patient with a different blood
type. The botched operation and subsequent unsuccessful retransplant opened
a discussion in the media, in internet chat rooms, and in ethicists' circles
regarding how we, in the United States, allocate the scarce commodity
of organs for transplant. How do we go about allocating a future for people
who will die without a transplant? How do we go about denying it? When
so many are waiting for their shot at a life worth living, is it fair
to grant multiple organs or multiple transplants to a person whose chance
for survival is slim to none? And though we, as compassionate human beings,
want to help everyone, how far should our benevolence extend beyond our
borders? Are we responsible for seeing that the needy who come to America
for help receive their chance, or are we morally responsible to our own
citizens only?

Rationing scarce resources presents an ethical challenge. I believe that
since available organs are so scarce, it is imperative that the utility
of donated organs be maximized. In this paper, I suggest that organ allocation
be rooted in distributive justice, which demands that equals be treated
equally and unequals be treated unequally. I will explore this formal
principle and the substantive criteria of equality, need and efficacy
(maximum survivability) as they relate to the just allocation of organs
for transplant. I will apply these principles of justice to Jésica's
case to show that while her first transplant was warranted, her second
was not. And, finally, I will conclude that Jésica Santillán's
case should serve as an example of what's wrong with our current system
of organ allocation.

First, let's address equality as it applies to justice. All other things
being equal, who holds a claim to the organs available for transplant
in the United Statesjust citizens, or illegal immigrants, too? A
recent Chicago news source cited the tragedy of "American taxpayers
and their children who died last year waiting for the transplant that
Duke University Hospital chose to give to a citizen of a foreign nation"
(Bailey, 2). This article went on to state that our system "rewards
illegal aliens for entering the United States to access our health care
system, thus condemning some of the American taxpayers who pay for that
system to premature deaths. Few could deny the sheer unfairness of such
a situation" (Bailey, 2). But how true are these statements? Are
organs allocated in a way that promotes inequality for American citizens?
An ethicist's first responsibility is to look at the facts, and the facts
in this instance tell a different story.

According to the United Network for Organ Sharing (UNOS), American citizens
are more likely to receive organs of non-citizens than vice versa; "As
a percentage, every year, U.S. citizens receive more organs than they
donate" (Vedantam, 2). Also, UNOS limits the number of transplants
allotted to non-citizens to no more than five percent of available organs;
however, no limits on donations are made (Vedantam, 2). These facts indicate
that Americans are benefiting from the organ donations of non-citizens,
receiving more than an equal share.

Another question arises when we speak of justice regarding this issue:
what does our society owe to illegal immigrants in light of the benefits
we receive from their participation in our economic and social life? In
his article, "Parties to the Social Contract? Justice and Health
Care for Undocumented Immigrants," Kenneth DeVille explains the idea
of the social contract as "individuals [who] create civil societies
by joining together for their mutual benefit and protection" (306).
According to DeVille, citizenship is not necessarily the best, nor the
only, method of determining who is party to this contract. He notes, "In
many cases, immigrants are socially, culturally and economically integrated
members of our civil society liv[ing] under the same laws as citizens pay[ing]
many of the same taxes" (307). He goes on to note the ambiguity of
an American system that halfheartedly enforces immigration and work laws
while "benefiting from, and in some cases exploiting, immigrant labor"
(307). He makes the point that the social contract demands extending social
goods to members of society who participate significantly within that
society. Our economy relies on the low cost labor of illegal immigrants
to keep produce prices down. We allow hordes of workers to do the backbreaking
jobs we disdain, turning a blind eye to aliens working in our fields.
If we, as citizens, benefit from their exploitation, we have a duty to
honor our side of the social contract and allow them access to our services.
In my opinion, UNOS has acted fairly in safeguarding equality of organ
allocation by taking into consideration the moral mandate we have as human
beings to care for one another. By allowing up to five percent of the
organs within its system to be allocated to non-citizens, they are identifying
the common bond between members of the worldwide community while respecting
and carefully guarding the resources of the American community.

Equal opportunity to tap into the system of organ allocation is just
one component of distributive justice surrounding organ allocation. As
Ronald Munson points out in Intervention and Reflection, "we
do not always expect that being treated justly will work to our direct
advantage" (37). But in a situation where resources are scarce and
not everyone who needs help will receive it, it is important that allocation
be fair. In selecting a system of allocation, it would be wise to choose
one "that favored those most likely to benefit from a transplant.
Rational planners [behind the veil of ignorance], ignorant as to whether
or not they will ever need a transplant or retransplant, would increase
their own chances of benefiting from a transplant by setting up a system
that, all else equal, distributed scarce organs to those most likely to
gain long-term survival from a transplant" (Ubel, et al, 270). Maximizing
utility just makes sense, so we need to determine which of the neediest
candidates are most likely to have the highest success rate. The basic
principle of justice that dictates similar cases be treated similarly,
conversely allows for different treatment when cases are dissimilar. It
is these dissimilarities that have the most effect on maximizing the utility
(or the life) of a donated organ. The first criterion to be looked at
is need.

In Transplantation Ethics, Robert Veatch outlines an interesting
way of assessing need. He calls it the "over-a-lifetime perspective"
(340). This approach takes into consideration a person's entire life when
determining who is worst off. A 17-year-old and an 80-year-old both dying
of heart failure are equally bad off, but this perspective allows that
the person who has had 63 more years of life is better off, so the 17
year old is neediest (Veatch, 341). Veatch writes, "from this over-a-lifetime
perspective, justice requires that we target organs for these younger
persons who are so poorly off that they will not make it to old age without
being given special priority. The younger the age of the person, the higher
the claim" (341). This methodology furthers the goal of utilizing
organs to their maximum potential.

Of course, it would be foolish to base allocation simply on the age of
the neediest patients; efficacy, or expected survivability, must also
be considered. Presently, our system of allocation gives priority to those
who are the sickest or most in need of a transplant. But sometimes those
who are the sickest and in the most immediate need will not receive the
same benefit from the transplant as someone whose medical condition is
currently more stable. Robert Veatch notes, "They may be so sick
that they have a higher chance of dying regardless of treatment"
(295). I believe there is a moral obligation, due to the scarcity of organs,
to maximize the potential longevity of donated organs and place them where
they are most likely to do the most good (bring the most health) over
the longest period of time.

This brings us to the question of retransplantation. Years of collecting
data show that "retransplant recipients at similar levels of urgency
do significantly worse than primary transplant recipients, a difference
that increases with each successive transplant" (Ubel, et al, 272).
Though I don't believe those who have already received a transplant should
be prohibited from receiving another, careful and objective consideration
should be given to these cases. Reasons for the organ failure and current
condition of the patient must be evaluated to determine if the retransplant
candidate will maximize the utility of the organ. Preference in the allocation
of scarce organs should be given to the patient whose chances of long-term
survival are best.

Now that we have a model for organ allocation based on the principles
of distributive justice, we turn to Jésica Santillán's case
to determine if her transplants were warranted. Starting with her first
transplant, let's review the facts. Jésica and her family entered
the United States illegally from Mexico several years ago. Doctors in
Mexico were not equipped to diagnose nor treat their daughter's rare heart
condition of cardiomyopathy which prevents the heart from pumping blood
efficiently and eventually leads to death, so, desperate to obtain medical
help for their daughter, the Santilláns paid $5,000 to be smuggled
into the country (Bailey, 1). Once in the United States, the family settled
with relatives in a trailer near Duke University Hospital and their story
was publicized in a local newspaper. A wealthy businessman took up the
girl's plight, raising money for her medical care and lobbying successfully
to get Jésica on Duke's transplant list. Meanwhile, her father
had found construction work and her mother was employed as a janitor at
a nearby college (Bailey, 1).

After being listed with UNOS in January 2002 for heart transplant, Jésica's
condition deteriorated, and in May 2002 she was listed for heart/lung
transplant (Fulkerson, 1). At 17 years old, Jésica weighed only
eighty pounds and was just five feet tall. Her small size made finding
an organ match more difficult. When a heart/lung block was offered to
Duke's pediatric unit, the two potential recipients who had been identified
by UNOS were unsuitable. In a tragic communication breach, the organs
from a type-A donor were awarded to Jésica, whose type-O blood
could only lead to acute organ rejection (Adler, 21). Five hours into
the transplant surgery, when the organs had already been exchanged, the
mistake was discovered. Powerful anti-rejection drugs were administered
and UNOS was notified that Jésica was "in critical need of
another transplant" (Duke, 1).

Let's stop here and apply the substantive criteria of equality, need
and efficacy of a distributive justice model of allocation to Jessica's
first transplant. Regarding equality, Jésica had a right to receive
an organ transplant based on the UNOS guidelines allowing up to five percent
of non-citizens to receive organs. Beyond that, her parents were also
employed, contributing members of society-a party to the social contract.
Jésica also fulfilled the requirement of need-without a transplant,
she would die, and using Veatch's "over-a-lifetime perspective,"
she was a particularly deserving candidate-her youth gave her a higher
claim. In the area of efficacy, Jésica looked to be suitable as
well. Her age and current condition gave physicians every indication that
the odds of her long-term survival were good. According to a distributive
justice model, Jésica's first transplant was warranted. Continuing
with the facts, we turn to the second transplant.

As a result of organ failure following the first transplant, Jésica
was placed on life support and within two weeks a second set of organs
was allotted to her. Before accepting the organs, doctors evaluated her
brain activity and surmised she had not suffered irreversible brain damage;
therefore, a second transplant was performed (Duke, 1). Though this heart/lung
block was functioning well, the trauma of the first organ rejection, paired
with being on life support for nearly two weeks caused irreparable brain
damage, and two days after the retransplant "all brain function had
ceased" (Adler, 24).

Applying the principles of distributive justice to the second transplant
scenario presents a different outcome. Though Jésica still deserved
an equal opportunity based on her illegal immigrant status, she was no
longer equally entitled to a second set of organs because her odds of
survival (and, thus, the odds of maximizing the utility of the organs)
were greatly diminished.
Her need was sufficient to push her to the top of the list (Kher and Cuadros,
1). Her young age again made her an attractive candidate, but the expectation
of her survival rate was now drastically changed, thereby minimizing the
efficacy of the procedure. Duke's staff determined the results of Jésica's
brain scan the day before the retransplant were inconclusive though they
showed "some minor stroke damage and some bleeding on the brain"
(Kirkpatrick, 1). In their urgency to save Jésica's life, the doctors
discounted the ill effect of being on life support for nearly two weeks.
Mark D. Fox, M.D., UNOS Ethics Committee Chairman, said that determining
whether or not someone is too ill to receive a transplant is problematic
in medical ethics because "the physician is always going to do what's
best for the patient" (Kirkpatrick, 1). While that action supports
a goal of maximizing the patient's chance for survival, it does not guarantee
maximizing the utility of a scarce organ. If Jésica's condition
before the first transplant had been the same as it was before the second,
she never would have been a candidate; therefore, her second transplant
was unwarranted.

Maximizing utility calls for hard choices but upholds justice by "contribut[ing]
to giving people opportunities for equality of outcome" (Veatch,
295). The sad fact is that Jésica's second transplant deprived
at least one and perhaps three people from receiving organs they also
needed to survive. In a desperate effort to "control damage after
its earlier transplant mistake" sound judgment was clouded and valuable
organs were wasted (Kirkpatrick, 1). In "Rationing Failure: The Ethical
Lessons of the Retransplantation of Scarce Vital Organs," the authors
write,

Health care workers cannot always be expected to recognize when it
is
time to forgo heroic lifesaving measures. Indeed, their traditional
role
as patient advocates would seem to compel them to ignore the odds and
do whatever they can to help their patients However, when such
heroic
measures require scarce resources that could be better used to help
others,
their good intentions can be unjust (272).

The tragedy of Jésica Santillán's death should be a call
to physicians, transplant boards, and UNOS officials to consider allocation
criteria outside the Intensive Care Unit where emotions are likely to
misguide decision-making. Doctors should not be made to feel they are
abandoning their patients during their greatest hour of need, but they
should also not be allowed to drain the resource pool when the outcome
is unlikely to be good. UNOS should implement a strict policy of organ
allocation based on equality, need, and efficacy.

Obviously, I've placed myself behind the "veil of ignorance"
in order to reach this proposal. If it were my daughter, my husband, my
sister, or my friend who needed the transplant, I would be all for solely
using the principle of need to determine allocation. But that's precisely
the point: we must have a policy in place that moves decision-making from
the more visceral, gut-feeling approach to a rational decision based on
projected outcome that is more appropriate for maximizing the utility
of our scarce resources. Heartbreaking, yes, but just.

The views expressed on this site are the author's. The
Markkula Center for Applied Ethics does not advocate particular positions
but seeks to encourage dialogue on the ethical dimensions of current
issues. The Center welcomes comments
and alternative points of view.